Music adds quality to end-of-life care program

Kathy Forsey and Aurelle Landry of the Hospice Palliative Care Society of Cape Breton County pose beside the donor recognition wall at the entrance to the An Cala palliative care unit at the Cape Breton Regional Hospital in Sydney. (Tom Ayers/The Chronicle Herald)

It was 4 p.m. on Christmas Day 1994 when I showed up at the Veteran’s Memorial Building in Halifax to pick my dad up and take him home for dinner. He was all dressed in jacket and tie but as I entered the room I could tell something was wrong. Sitting at his desk, where the former math teacher “worked” every day, I could see he was sloped over to one side. Although 87 years old, it was not an exaggeration to say he had rarely been sick a day in his life.

I called on the nurses for help and we got him into bed, where he lay for the next 12 hours with his only complaint being pain in the bicep areas of both arms.

At 4 a.m., during one of the nurse’s visits and checks on his pulse (and now I know his breathing and skin colour), this nurse — an angel in my opinion — started asking me questions about Dad’s family. She asked me the names of my brother and sister. She asked how they were doing, where they lived and what they did for a living. She asked about our children and had me say their names out loud.

And then I looked over at my dad and said, “I think he’s stopped breathing.”

This angel of a nurse had helped me lull my dad off to whatever comes next listening to the sound of a devoted daughter and words of love about the family he and my mother had created. The nurse knew, as I have come to know, that hearing is thought to be the last of our senses to go as we lie dying.

Although there is no empirical information to prove it, medical personnel such as palliative carephysician Dr. Anne Frances D’Intino at the Cape Breton Regional Hospital think it makes sense.

While speaking at a Death Café event in Sydney a couple of years ago, Dr. D’Intino explained that as our bodies close down we become weaker to the point that speaking and even opening our eyes takes more effort than we have to give. But hearing is a passive action where we don’t have to do anything — just receive.

And that’s why a music program in An Cala, the palliative care unit of the hospital in Sydney, Cape Breton, is so important to both patients and their families.

“The main goal of music therapy in palliative care is to improve the quality of life for the individual,” says hospital music therapist, Jill Murphy. “It gives them something to focus on and helps alleviate their fears or anxieties as well as their perception of pain.”

Ryerson University professor emeritus Marilyn Hadad is an acknowledged Canadian expert on death and dying. In her widely-acclaimed textbook, The Ultimate Challenge: Coping with Death, Dying and Bereavement (Nelson Education Ltd., Toronto, 2009), she says that many people report having death anxiety. She writes that this is demonstrated by a reluctance to engage in conversations related to it.

Our job, then, as caregivers and people of compassion, is to provide more than just physical care for the dying. We must remember that those who are in their last days of life also need emotional and spiritual care.

“Music is expressive,” says Murphy. “It can help patients communicate and express how they are feeling. It also provides comfort and support to the families as they are a part of the patient’s journey, too.”

Knowing that music travels with people throughout their entire lives, Murphy had a desire to pair her music education from Acadia University with her interest in the geriatric population. As a result, she was very open to the idea of developing a new program at the Cape Breton Regional Hospital.

And an idea was brought to her by Nicky Duenkel of Boularderie, Cape Breton. Nicky had put together a choir of nine people who were attracted to the idea of helping out at the hospital. They call themselves the Cape Breton Comfort Choir.

Each member has their own personal reason for volunteering their time to sing at the bedside of a seriously ill person.

“Singing has always been healing for me and I just thought when I’m at the end of my life and it’s my turn, I would want someone singing to me,” says Duenkel.

Lars Willum of Ross Ferry sings in several choirs. He was instantly attracted to the idea of this particular choir because of his own experience with his mother’s end-of-life time. He explains that he would often play opera and lullabies for her.

“She sang them for me when I was a baby,” he says, “and it was nice to be able to do it for her.”

He notes that the repertoire of songs the group has is extensive and always developing.

Doran Hayes just recently moved to Boularderie and is looking for experiences to broaden her “music muscle.”

“I thought it would be a good opportunity for me to learn how to harmonize,” she says. And she says membership in the choir has taken her out of her comfort zone — something she welcomes.

“It’s nice to know that something I do can bring comfort to other people at the end of their journeys,” Hayes says.

Celtic Colours co-founder Joella Foulds is also a member of the special choir.

“When my mother was dying I would sing to her. I was able to sing to her as she peacefully slipped away. To be able to do that brought us so much comfort and healing.”

The hospital’s volunteer resource co-ordinator, Lisa McNeil-Campbell, says the music therapy program is unique in Nova Scotia. Choir members not only receive the hospital volunteer training but also have to take special palliative care training.

“Our top priority here are our patients and their families,” she says.

American theologian Thomas G. Long wrote a book entitled Accompany Them with Singing about the importance of music at the end of life.

“Accompany them with singing!” he says. “It is good for the voices of the community singing praise to be heard above the noisy clamour of death.”

Music therapist Murphy agrees. She accepts referrals for the choir from staff and provides the choir with information such as the patient’s physical and spiritual needs and the type of music the patient likes. As a result, pretty well anything can be heard in the halls, from traditional hymns to modern pop tunes — whatever gives a patient joy, comfort and relief can be heard at any time.

“It’s often an unexpected service,” says Murphy. “People are surprised to see someone come in a room with a guitar. People feel they have been given a gift at a time when it is unexpected and it can be quite meaningful to families.”